Sunday, 23 February 2014

Chorea

Block: Community medicine, week 2

"Chorea, or St Vitus' Dance, is the occurrence of short, purposeless, involuntary movements of the face, heads, hands and feet. Movements are sudden, but the affected person may hold the new posture for several seconds..." - Black's Medical Dictionary, 42nd edition

So last week I was based at a stroke unit in a hospital for the first week of our community medicine block. Each week I move to a different location and setting so for my second week (of three), I was sent to a centre for adults with neurological disabilities to observe the care provided.

I have to be perfectly honest here, this week was not much fun. It was tiring, both emotionally and physically. The latter is something I am familiar with...the former is something I have been fortunate enough to have never really encountered before in my personal life.

I have worked with adults with acquired brain injuries before, back when I was applying to medical school and I wanted to do some volunteering. The centre which I volunteered at back then was rather different to the one I was based at this week however in that the adults I met on volunteering, whilst disabled, still maintained a large degree of independence. This was in complete contrast to the residents I met this week, nearly all of whom depended on the carers to assist them with every aspect of their personal care.

This alone was fairly eye-opening. I had never really given much deep thought to the work which carers do. I was aware that it's an invaluable and demanding job which isn't well paid at all, but I suppose until I actually saw the nature of the work first hand, I didn't really and truly understand just how very personal it is and what a difference it makes to the lives of the patients, most of whom (due to the nature of their conditions) are also completely unaware of the care which they are receiving.

Observing the work of the carers was physically tiring as it meant long hours and early starts, but it was nothing compared to the emotional impact of seeing the effects of long term neurological disability. What had the most significant impact on me was seeing a patient with Huntington's disease on the second day of the placement. Huntington's disease is something which is taught to any GCSE biology student as a prime example of an autosomal dominant condition. Back then, all I remember was constructing Punnett squares and learning that because its signs and symptoms manifest later on in life, many of the sufferers have already gone on to have children who will also be affected before they themselves realise they have the condition.

At medical school this basic understanding was slightly expanded upon with the inclusion of some facts about CAG repeats, PolyQ tracts, and mutant Huntingtin protein. I dutifully memorised the definition at the beginning of this post in case an exam question came up asking me to define the main symptom, chorea (no such luck). By this point, I felt I had a pretty good understanding of this condition.

All of the above however, as scientifically fascinating as they may be, are completely useless at actually getting across the severity of the condition or indeed, for preparing you for the physical reality which the patient faces on a daily basis. Based on the dry definition from Black's, I had somehow assumed that chorea was basically like a more severe form of twitch...but not something which would make the patient look like they were receiving an electric shock to their entire body. None of my notes on the genetics of Huntington's disease prepared me for the sight of the patient lying in a bed with raised, padded sides, with weakened, wasted limbs, unable to understand what's going on in the room around them - the carers preparing the liquid breakfast...the shouts coming from another patient's room down the corridor...the medical student standing in the room trying to connect the dry textbook definition which was rote memorised months before and the three-dimensional evidence of a condition which someone else has to live with everyday for the rest of their (shortened) life...

It was a steep learning curve to say the least. By the end of that second day, I was feeling pretty down indeed. I suppose I should mention at this point that I don't normally get very emotional; usually I'm quite composed and in control of my emotions. That's not to say that I don't care or I don't have human empathy...but in my personal life I'm not very prone to shouting, crying, etc. It's just not me. But by the end of that second day, and for the first time in nearly 6 years, I felt the full force of my emotions.

Things improved slightly after that. Once I got my initial emotional reaction out of the way, I gradually got more used to the nature of the centre and began to accept that it was what it was. So the third and fourth days of the placement were a bit easier to deal with. At the end of the week, I went out and got extremely drunk (I think I spent about £30 on Jagerbombs alone)...that too also helped, though admittedly, the following morning wasn't much fun.

Before starting medical school, I knew that before long I would encounter emotionally demanding situations...I didn't get into the profession with false impressions or delusions, but I suppose actually being faced with the situation for the first time was bound to be tough to deal with, no matter how prepared I felt for it in my mind. I guess like the long hours, endless exams, increased student debt, etc it'll be something which I'll get more "used to" as time goes on, as callous as that sounds.

Finally, here's a nice song from the legendary Woody Guthrie, who also had Huntington's disease:

2 comments:

Kinda understand how you've been feeling actually.It's weird isn't it? You spend ages over a disease, learning its ins and outs and all the molecular level stuff - but that doesn't prepare you for what that person is going through. I'm glad that you're feeling better about it :)I mean off course we're meant to care about our patients - but how much is enough? And how much is too much?Rawr xxx